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June 09, 2020
SCID Compass

SCID Compass invites families to inaugural Lunch & Learn Forum

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Families and individuals impacted by severe combined immunodeficiency (SCID) are invited to tune in for the first-ever SCID Compass Lunch & Learn Forum. The virtual Forum takes place on Tuesday, June 23 from 12 to 1 p.m. EST and is an educational outreach effort by IDF’s SCID Compass program. Presented as a webinar, the Forum features

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May 29, 2020
SCID Compass

Duggans celebrate every victory, even small ones, during journey with SCID

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When Audrey and T.J. Duggan visited the pediatrician’s office with their five-day-old baby, Dean, for a weight check in October of 2018, they noticed the nurse was wearing a mask. “She had a mask on and I thought, ‘That’s terrible. What is she doing here if she is sick?’ And then our pediatrician came in with a mask,” said Audrey. At that point

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May 29, 2020

COVID-19 Update Video - May 29, 2020

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Kathleen Sullivan, MD, PhD is the Chief of Allergy and Immunology at Children's Hospital of Philadelphia and a member of the IDF Physician Advisory Committee. She put together a video update with some helpful information about COVID-19. This video focuses on immunology and treatment and is divided into the following sections: PCR vs. Antibody

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May 22, 2020
SCID Compass

Treatment in clinical trials an option for some forms of SCID

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When a baby is born with severe combined immunodeficiency (SCID), parents are faced with making a major decision about treatment within a short period of time. A baby with SCID has no immune system and infections of any kind can be fatal. Treatment can provide a baby with a functioning immune system and must take place within a baby’s first year

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May 13, 2020
Living with CGD

Making Needle Pokes Easier for the CGD Community

POSTED BY: AFreestone

Interferon (IFN) gamma is sometimes used in conjunction with antibiotics and other treatments as a preventative against infection for people with Chronic Granulomatous Disease (CGD). It is given by injection, usually several times per week. For some patients and parents, these needle pokes can be incredibly hard. If you are one of these

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